Comp B-Improving the Care and Outcomes of People Living with SB

描述（由申请人提供）：阿拉巴马大学伯明翰分校（UAB）自成立以来一直致力于国家脊柱裂患者登记处。美国疾病控制与预防中心认识到登记的必要性和益处，以促进脊柱裂患者在所有领域的医疗保健进步，并建立了国家脊柱裂患者登记。这项倡议的目标是提高医疗保健质量，并了解脊柱裂患者的人口统计学和特征。从2008年开始，阿拉巴马儿童医院与阿拉巴马大学伯明翰分校（UAB）和辛辛那提儿童医院与Ground Zero Software的程序员合作，开发了一种针对脊柱裂的诊断专用电子病历（EMR），名为“网路搜寻家”（Webtracker）。“网路搜寻家”被设计成脊柱裂电子病历，可以被诊所普遍使用，也可以作为数据点的存储库，用作嵌入电子病历的注册表。UAB随后根据FOA DD08-001获得资助；它由9个地点组成，这些地点被选中登记患者。该资助周期于2011年结束，但遇到了一个新的资助机会，FOA RFA-DD-11-005，其中UAB被选中继续收集登记中包括的患者群体的纵向数据，并将诊所的新患者添加到登记中。截至2014年2月1日，UAB已收集了485例患者的数据，并完成了自2009年以来的1,364份年度报告。UAB在入组人数、纵向数据报告数量和入组合格患者数量方面领先于所有注册站点，占入组合格患者的99%。UAB致力于继续收集我们诊所中患有脊柱裂的儿童和成人的纵向数据。这些数据将被用于提高护理质量

DESCRIPTION (provided by applicant): The University of Alabama at Birmingham (UAB) has been committed to the National Spina Bifida Patient Registry since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with Spina Bifida and established the National Spina Bifida Patient Registry. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with Spina Bifida. Beginning in 2008, The Children's Hospital of Alabama with The University of Alabama at Birmingham (UAB) and The Children's Hospital of Cincinnati collaborated with programmers from Ground Zero Software to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida called Webtracker. Webtracker was designed to function as a Spina Bifida EMR that could be used universally by clinics as well as to be the repository for data points that woul be used as the registry which were embedded into to the EMR. UAB was then funded under FOA DD08-001; which consisted of 9 sites that were selected to enroll patients into the registry. This funding cycle ended in 2011 but was met with a new funding opportunity, FOA RFA-DD-11-005 where UAB was selected to continue to collect longitudinal data on the patient population included in the registry as well as to add new patients in the clinic to the registry. As of Februay 1, 2014, UAB has collected data on 485 patients and completed 1,364 annual reports since 2009. UAB has led all registry sites in number of enrollees, number of longitudinal data reports, and the number of eligible patients being enrolled at a percentage of 99% of eligible patients being enrolled. UAB is committed to continue the collection of longitudinal data on children and adults with Spina Bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB also intends to develop hypotheses in the areas of patient compliance after transition, variation of treatment amongst clinics in urological management; specifically urodynamic testing, and variation in neurosurgical management. These studies will be completed using the National Spina Bifida Patient Registry data.